It has been a week. I am on my very last day of treatment until I go back to my LLMD this month. I am beyond excited about this. I am ready for a new game plan. Beyond ready.
I have definitely been plagued by fogginess, depersonalization, and exhaustion the past several days. I guess I will start with my funny story, one that some of you may be able to relate to.
At the end of last week, I was not feeling well at all. I was herxing pretty badly from finishing up my last round of antibiotics during those days off. I had to deposit my paycheck, and pick up a prescription from the pharmacy.
I opened my car door, tossed my script bag and purse in it, then proceeded to get ready to sit down. There was one teensy little problem though…
This wasn’t my car. Staring at me, was a very confused and slightly horrified girl sitting in the driver’s seat, that I nearly sat down on. I can only imagine what was running through her mind. LOL
How I didn’t see her, I do not know. Her car was not even remotely parked near where my car was parked, and it was not the same model, nor did the car look the same. I drive a Legacy, and this was a Mazda. I got the color right though! Oy.
I was mortified, mumbling, “I am so sorry” to her, and she seemed really nice, telling me it was okay. I sat in my car embarrassed for a few minutes when I finally did find it wandering after around the parking lot in la-la land before I headed home. At least I didn’t end up getting punched in the face, pepper sprayed, or tazered. So that’s good, right?
By the time I got home, I spent the rest of the day relaxing, and I was completely over it. It is now just a funny story to tell, and I am sure she certainly had a funny story to tell others, that some crazy chick threw her stuff in her car and tried to sit on her. Shit happens.
Friends of ours just bought a house, and Dave and I stopped by. Dave helped move some of their stuff, and bring over their heavy pool table, and I sat and was kind of a boring zombie. I always feel so rude when I am like this. I look bored, and I do appear to be rude, but I just am kind of spacey and fluish.
I was a little disappointed, the girl who was beyond mean changing dinner plans to dancing to make sure the plans would no longer include me, full knowing I could not go a few months ago, completely crushing me, then starting a middle school he-said she-said drama fest, that although got squashed pretty quickly it was still completely uncalled for, showed up to my surprise.
It was just plain awkward, I just wanted to go home. Stressors just make me even more tired and achy, more symptomatic. At least I can be a civil person. An apology goes a long way, and that has yet to happen. Yep. Still irked.
It felt like a non-intentional but completely intentional gang up time, a be nice to my face but taking stabs at me in the back sort of night on both parties. Shake it off, Kimmiecakes. I could have went without though. No one likes hurt feelings.
I started my last hurrah, my round of Coartem on Monday. I really wanted to start it on Sunday, as it just works out better with my work schedule, but the pharmacy didn’t have it in stock. They thought they had another refill for me but were mistaken, so Monday it was.
That was a very long day, and I can’t even use the excuse of Coartem to be the cause. My Babesia is much better controlled than it use to be, which is very optimistic. Slowly but surely, my treatment has been effective toward getting it much more under control.
This morning, however, was a reminder that the infection is still there, waking up with soaking wet hair and clothes. It looked as though I jumped into a pool then crawled into bed. I had such a “good”.. we will call it good for it being intense, it wasn’t actually “good” tic in the office that I slammed my hand on the bottom of the desk, as I had my hands resting on my lap. Ouch!
You know that long talk I had with my heart doctors that led me to believe that I would be treated with respect and taken seriously the end of last week? Well.. that was rather short lived. I went online to make another few copies of my recent blood work to give to doctors in case they had not received them, and my medical encounter/diagnosis part of the bottom of my blood work was changed, from the moment I talked to them, to Monday. “Tachycardia NOS” was originally written, and then a medical coding that said in capital letters looking it up, “Methadone and Opiate Use”. Are you kidding me??!!!!
I went to the hospital to try to get to the bottom of this issue immediately. I demanded a drug test. Unfortunately, my GP is all buddy-buddy with my heart doctor, so I have been getting the run around. There were three doctors that could have signed off on the test but it supposedly needed to be “discussed”.
The heart doctor said he felt it “wasn’t necessary” to drug test me, and would be “too busy doing rounds” for this entire week. I talked to the manager of the department, and she claimed yet again there had never been conversations about drug use, and claimed there was no record of this all. Hey… let’s call her Felicia (that obviously isn’t her real name), I JUST talked to you about this issue last week. AND during our conversation, she kept contradicting the whole not ever having conversations about this by referring to our conversation, and another conversation I had with another woman there about the situation.
My next step was to call day surgery, who’s staff knows and loves me, as they saw me every week for 15 months, sometimes more than once a week, to see if they could get someone to sign. Unfortunately, no one was there to sign, but it felt nice that they felt the same way, that this is entirely bull.
Dr S came to my rescue today. He signed off on my lab work. A full drug panel. This way, there is no ifs, ands, or butts about all of this. I need to stay in control and be level headed, but I desperately want to write “See, go eff yourselves”, with a smiley face on the papers when I am able to fax them over. My next step after this is to make sure that record is changed.
People left and right are telling me to sue, technically I have every right to, you cannot diagnose someone with being an addict without ever testing them, nor can you just go changing around paperwork, nor can you continuously harass patients with name calling, not making my medical care or truly figuring anything out possible in any way.
Unfortunately they are very careful with wording, and I already talked to the Medical board in NH when I was extremely mistreated by the ER see: https://kimmiecakeskickslyme.wordpress.com/2013/07/11/july-part-2-hi-ho-hi-ho-off-to-the-er-i-go/ , followed up by how far I got with the state : https://kimmiecakeskickslyme.wordpress.com/2013/08/09/er-follow-up/ and learned pretty quickly, right or wrong, legal or not, they tend to side with the doctors. The last doctor, the ER doc, got fired a week or two later because he wrote scripts to himself, so the Karma train did hit him, and not going to lie, it put a smile on my face. It made me feel a bit more even.
I also found that my hospital (not the hospital who is throwing out these accusations), cannot prove they were the ones who changed the paperwork, although it is pretty Captain Obvious to anyone with half a brain.
I called the manufacturer for my heart monitor at that point, to let them know that this is how the hospital is representing their company and their medical device, and also to ask them out of curiosity if I decide to get the device removed, if I can get it removed at a hospital of my choosing, and mail their internet modem back to the company. I have one of their personal numbers, and will call them once I decide exactly what I want to do.
It has clearly been a lonnnngg few days. I am remaining strong, and am advocating for myself. I will get this all sorted out. A big pot hole along the way, but I will make it through it, I always do.
After all of this however, I have decided at this point I might need to tell my LLMD office that I need a break. Not a break from treatment, but a lighter treatment. I think there should be no issue with agreeing on this, as I was told he does not give out any stronger protocols than the one he specifically put me on, and I have been being treated so aggressively for a very long time.
I need to tell them between the mistreatment of other doctors, and I think even worse, whatever Cipro was doing to me, I need to have a much lighter load. I am a positive person as you all know me, but my spirit has been breaking. Little by little. I need some sanity. This isn’t giving up, this is giving my body and mind a bit of a rest. I hope they understand.
Tonight Dave will be gone to a club meeting, so I will be here, likely napping. I know when it is time to take those four last little pills in the bottle, it will be one of the happiest couch dances I will ever have. One step of the journey down, and another will soon lie ahead. I have no idea what to expect, and that’s okay. For the moment, I am just going to bask in the glory that I have been so strong and have made it. I never gave up.